Water Retention

[Skippy]

I was wondering if any one had exp of or can give advice on dealing with the body-water retention to hips, thighs, legs and feet ?

Is this a natural symptom of PC and its spread?

Patient eating reasonably well no pain, but weight loss obv to upper body which is very thin, whilst lower body is bloated.

The patient is exhausted and reluctant to walk about much in last few days

Thank you

[LisaC]

My fiancé had the same issue swelling to feet legs abdomen, we were advised to elevate little walks etc.

They said it was due to the liver mets pushing on the vessels that control flow to the legs and use of steroids.

Some blisters appeared to the feet which were weeping so the district nurse dressed the areas.

They said the chemo would help as this was a symptom of the cancer and it’s spread but he was not well enough.

[Skippy]

Thanks Lisa.

My bro is on a Drs steroid tablet per day and has been for 3 weeks.

He was doing well until this fluid arrived 3 weeks ago. . He's so heavy legged now he is gasping for breath to walk. He can hardly get off the bed or chair.

He was breathless last night and in so much distress I called an amb. I handed the amb man some explained diagnosed consultant's papers and before he even took his pulse he asked " have you had discussions over DNR?" We asked " what's that?" He then said, " It stands for Do not resucitate?" We were gut wrenched at this comment !!! NO no one on his palliative care team has discussed such a horrid topic at this stage. I was furious. My bro was in shock. Talk about giving a patient his death sentence !

They merely advised us to ring Drs in daylight. Quoting covid risk in comparison to state of health. Best stay at home.

They didn't ease his symptoms or fears, leaving us more distressed than on their arrival.

So we had to wait to ring surgery, waiting anxiously and gasping for breath another 6 hrs until opening surgery time. The clock stood still.

The good Dr came out in timely fashion and was shocked at " his fluid build up from toes to scrotum" how long? Did no one see this ? and suspecting maybe a thrombosis? He took blood samples and left saying he "would ring around 5pm tonight with results. He may have to be admitted to hospital. -NO ONE has rang back. We have no idea on what's going on. Still no ease of my brother gasping on every effort to move.

My bro feels totally devalued. It's not kind. Why has this gone this way? . It's been one 'telephone consultation' after another. Hes supplied his own weight and height and symptoms over a telephone. District nurse attends, he inf them of leg fluid building up. They record it on a clip board and merely left the house-not examining him to see his true poor condition. Legs are leaking fluid- its so obvious.

I'm distressed. I'll not sleep knowing he may call out for help tonight.

We will be ringing surgery in 9 hrs time AGAIN. I'm nearly 70. If amb called tonight I hope they take both of us as I'm so ill with worry.

[PCUK Nurse Dianne]

Dear Skippy,

I am sorry to read your post on the forum, I am sorry to hear you are struggling at present with your Brother's situation. I appreciate this is a very difficult time.

It might be helpful if we touch base outside of this forum Skippy, and please do feel free to contact us on the support line if this would be helpful. I would like to offer you some guidance and will make contact with you.

With kind regards,

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Ph: 0808 801 0707

Monday, Tuesday, Thursday & Friday 9am - 4pm

Wednesday 10am-6pm.

[LisaC]

The drs discussed DNR with my fiancé too he was 37 years old. It sounds scary but it does not mean that they are writing the person off and won’t help. There has to be a limit to the care that can be provided when someone is already unwell as there are many medications and machines that can keep people alive for a long time but have serious consequences and are not always in the best interest.

The purpose of CPR is to reverse the cause of the heart stopping and this has to be done quickly, when a person has a cancer that is not something that can be fixed during a cardiac arrest. That does not mean they won’t treat the person if they say have an infection and need antibiotics or break their leg and need it fixed.

The way the palliative nurse explained it to my fiancé was if I collapsed and needed CPR the chances of getting me back a normal healthy person were slim. And having done CPR on many people (I’m a Nurse) it’s an awful thing to do to a person.

My fiancé had a blood clot on his lung it made him very breathless, blood clots are common with cancers.

[Skippy]

Yes ive seen reasoning now re DNR from amb team. It did make sense I guess not having heard this I went into shock. Bro's blood tests arrived by phone 1am. I was so happy to hear a drs voice. He was rushed to hospital now for assessment.

Thank you for explaining things to me.

It's hard to see loved ones suffer.

I didnt expect such a fast decline in about 3 days.

I thank the forum for email support. We all need help on here.

[LisaC]

Yes poor Lewis was in shock too until I explained it too him, he was so anxious and hadn’t slept and he was also deaf and lip reads so the masks made everything difficult for him.

Lewis decline was rapid too it’s shocking how quick things can go the wrong way but it takes so long to get things back to a good place.

I emailed the nurses a lot during the diagnosis and the time we had they helped me so much.

[Skippy]

Well my bro was eventually admitted to the oncology ward. I feel so relieved now he is in expert hands. For the water retention I've heard 3rd hand he has some type of infusion and fluid pressure is being released. He is passing water so regularly now. It's bound to make him so much more comfortable.

I dont think I can visit him? Hes only just got settled into this bed at 10pm today having been on a trolley for hours awaiting a bed, then into an assessment ward for hours. Then a amb transfer across the city to another hospital. Im thinking of hospital covid policy. He has his mobile and we have text contact. Its sad I'm not with him he must be very afraid but I know he must be more comfortable. He's due ct scan to what I believe is lungs for susp clot and/or cancer spread to liver to see if the fluid blockage begins there.

I dreaded being called upon when he became less able, I didnt think I'd cope with caring for him 24/7 these last 7 days have been very heavy physically and emotionally but it's amazing how you just do it, you get on with it, anything, to ease a loved ones suffering. I was dreading this time, convinced I'd not cope but now I'm beginning to feel yes I did at the time and I feel priveledged and lucky I was to share any time I have with him while he's here.

I dont know what's around the corner tomorrow this optimist thinks he's coming back out in a fitter state- It has to be putting him first. I'm hanging onto that- It's been 21 months of PC some very good and hopeful days, some down right nightmares.

My big bro it would be good to turn the clock back 3 yrs just for a while. Its been an all consuming time for everyone. I'm unloading on my own kids who unload on their partners it brings everyone into this disease.

What I've realised is tho how many of his pals have eased away. Its natural I suppose. As my bro has withdrawn himself. Id tell people please don't back away make the phone contact and talk about any thing but not just about the damn disease.

[LisaC]

That’s good that he is getting the help he needs, hopefully the infusion (I’m guessing frusemide) will offload some of the fluid and you will know more once you receive the scan results.

[Skippy]

Well my bro delivered news to me at noon from the hospital bed. (Id rang his mobile for update) he revealed to me, " I've only a few weeks".

Our contact is only by mobile phone. Ive never been so grateful to the technology of a mobile phone as I am right now. No visitors allowed I'm informed by his daughter.

Heart broken.

[LisaC]

I’m so sorry, working in a hospital I know there is a policy for people who are unwell like your brother to be allowed to have visitors. I was allowed to be with Lewis in the hospital.

Is there a plan to get him home or somewhere more comfortable?

[Skippy]

My bro is relating to his son and daughter "he wants to come home" I do think the kids have asked for visits and it's been refused on the oncology ward. Ive liaised with his grown up children as to his last state of health when I was with him. For last 21 months I've been carer staying over week at a time and they've played the walk in walk out short visits. They have no experience what this last month has involved. I've tried gently to inform his daughter on what lies ahead for us. Last Sunday Night to Monday night he gasped for air and no one arrived for 2 hrs.amb wouldn't take him in at first arrival. I was in total debilitating shock all day

Shes rang around since his hospital admission and shes came up with ' package' of 4 day visits by carers oh and "ME I will be his 7pm- 8am night resident supervisor with " a baby monitor in my bedroom at his house"

I've totally LOST it. They're intending to keep the same stance I've carried him for months. I CANT do it any more on my own.Im nearly 70. I'm abs broken for him. I cant function, I can hardly breathe. I've told her "Yr not leaving me to do this alone not anymore" now total texts silence.

It's gut wrenching. I cant sleep I can't eat. I just burst into tears nothing else can hold my focus off this nightmare journey. Hes going home Monday.

They tell me "they've a new rise and fall bed for him. ( He can't even stand unaccompanied)

I'd rather he were with professional experts safe and comfortable and secure in a hospice. It was distressing for both my bro and me. An awful awful scarey time.

I'm so pleased yr out there to see your reply. Thank you

[LisaC]

A hospice would be a good place for him to go. They will allow visitors although they may be strict due to covid.

Have you spoken to the hospital about a discharge plan yet? I know hospice beds are hard to come by where I am but it may be easier where you are.

I found it difficult to look after Lewis alone and I needed the help I could not of managed to have him home and just be me and him in between the calls of the carers or district nurse, he passed I the hospital as the local hospice was closed due to covid. Not the ideal setting but he was comfortable looked after and there were nurses in hand 24/7 if he needed any medications.

If the discharge plan is relying on you being a main carer and you can’t manage you have to let the hospital know otherwise they will carry on planning the discharge and it will be difficult to sort something else out as they will just want to get your brother somewhere more comfortable as soon as possible.

But whatever happens the thing that matters most is that your brother is comfortable.

[SusanM]

Dear Skippy

I feel for you. Has your Brother said what he wants?

My Dad wanted to stay at home and didn’t want to go into hospital or a hospice. We were told he had 6 months but he lasted almost 2 years. For about 18 months of that he required 24/7 care. He had a one bedroom flat, he wouldn’t move or stay with family. We got very little outside help, in fact apart from a district nurse who visited once a fortnight to go through questions in a file and a Macmillan nurse once a month we got no help. It was left to me and my brother. My brother worked during the day and then stayed with my Dad overnight- I did the day times while trying to work from his flat. I would love to say I was a saint and never moaned to others but that would be a lie. It was very difficult mentally, physically and emotionally. Unless someone has done it, they have no idea. So your nieces/nephews will have absolutely no idea what challenges you will be dealing with. I have a sister and another brother who did the flit in and out visits, I hated them at times. I envied their freedom but now I am so glad that I was able to do it for my Dad. I am proud of myself. You won’t see it now but you will be so pleased that you will be able to look back and be thankful you did it. I know it’s hard, just give it a final push. Try not to fall out with the family. I wish I could help you in a practical way. Be kind to yourself x

[Skippy]

Thank you for telling me of your experiences. It really helps to read them and digest each word of practical help and your amazing concerns.

You've been so brave.

I saw a TV news article today which involved a hospice full of covid patients. I can see if a hospice was in need for him then perhaps my bro may not get an option. What a mess this Covid brings. We could have all been in and out the ward doing turns around the clock comforting him right now staying by his side, releasing nurses of their carer attendances - but knowing experts were at the ready to jump in to ease his symptoms. Instead day 4 he's on his own. Hospice suggests 1 hr visit only per day.

His kids (48 /45) will see my bro home. Their decision. My brother text me from hospital to tell me he is "looking forward to seeing the kids. He also told me to rest up" so I feel he is releasing me (for a while), and a weight has lifted today and I'll now regain the courage and strength soon to go back to be with him. I needed the kids to get involved. I had to withdraw, not just for my own recovery but to make them step up this Its their time with their Dad. They've left me to do it all for such a long time. I had become resentful, but I had felt blessed with the time I've shared with him. Just knowing they're taking the strain off me a bit now gives me the lift I needed.

I feel in tears most hours. I was wishing I could just 'go with him' if I could. I imagined jumping into the next ward bed to his and just sleep and not wake up. I'm nearly 70 he's been my absolute rock all my years.

But ive still got my own kids and grandkids and they rely on me too. We will get through this. Thanks its good to pour it out here.

[Skippy]

Well last Monday my poorly bro got home out of hospital (3rd time) what had been optimistic weight gain was build up of fluid retention. Nhs provided a bed and equipment that would electrically move to suit sitting up position plus commode. He couldn't stand. His son was optimistic but with fast flow of nhs carers who "shouted" who they categorised by age alone, thought he was deaf. He was very much not. In and out the door in minutes no regard for patient but more for tasks to do and get out as fast as- it was obv the personal needs and anxiety would be left in main to family members 24/7. After 24 hrs of distress to everyone incompetent to deal with the shock - a wonderful opp came for the transf from home into Hospice The Marie Curie abs wonderful, private on suite room looking out of French doors into the garden. He has huge sea wall pictures huge TV set. He can have whatever he wants.his fav is soup and ice cream. He never wants to go back home to his gloomy home. I see him in total peace and he smiles at his situation. He's a great man. I talk to him in exact same way, and we are like a pair of old slippers together in the room.

Thank God for these wonderful 5* rooms. He sits and watches the garden squirrels at the window. We are all so content. He has no pain which is very strange considering his "weeks left" it's a day at a time. This is 21 months on from first diagnosed.

We had hoped for more time but he's at peace with his life.

[LisaC]

I’m glad that he is somewhere peaceful, the anxieties of all the carers and time constraints don’t make for a pleasant time so I’m pleased to hear that he has been transferred to a hospice.

It must be a weight off your mind also.

Enjoy the time together if you can, listen to your favourite music watch favourite programs or just sit quietly and watch the wildlife.

[PCUK Nurse Dianne]

Dear Skippy,

How wonderful to hear that your brother has access to the Hospice, they are as you suggest such peaceful and wonderful supportive environments.

I hope you may be able to visit your brother and of course other family also during these very special days. We hope that your brother is comfortable and at peace at this time.

With our special thoughts.

Dianne

Pancreatic cancer specialist nurse

Pancreatic Cancer UK

[Skippy]

Well my brother has been given a beautiful room in the Marie Curie and its bright, 5* attention and treatment. I couldn't have wished for a more comfortable safe place for him. We are only allowed in 1 person per day for one hour after a covid test.

His bed looks out over the gardens with grey squirrels hopping outside. He looks well cared for. He looks at peace finally feeling safe.

The last few days has seen the increase of meds which makes him sleep a lot. He reports no pain at all. Just weakness. He's watching his TV.